Perhaps some of you have been faced with the question "What is it like to live with your special needs child?"
Although each home and situation are different, I believe there are common areas. Our children are a gift from our Heavenly Father. As such, there lies a responsibility to be grateful for him or her and to "train up our child in the fear and admonition of the Lord." I have found that how ever "disabled" a child is, when parents are following the Lord, there remains a deep seated love and thankfulness for that child.
You know, it is amazing how much we can endure. The Lord always seems to give us strength right when we need it -- and sometimes not any sooner! All we need to do is ask for it! I don't know how many times I have cried out to my Lord, "I can not go on!" (I hurt too much, I am too angry, I am exhausted, so the list goes....) He is always faithful to restore me so I can continue on. We have a statement in our home, "It's not that I am afraid I will not make it...it's HOW I am going to make it."
Growth hurts! My requests for spiritual growth are taken quite seriously by the Lord, and growing pains are a common occurrence. From the world's perspective, I suppose we are to be pitied, (at least our children are). I have a hard time dealing with those who come after my children with gushes of sympathy. If they only knew how NORMAL my children are. They are absolutely more normal than abnormal.
Yes, they may outwardly look different, but they are all at times disobedient, in need of lots of hugs, love ice-cream, like to sing, are happy to have stories read to them, get colds, love hamburgers, go nuts over balloons - the list goes on. When I look at my child I don't see Down syndrome written across his face.... I see the remains of peanut butter and jelly left over from lunch!
There are occasionally rough days with my children. (How about a rough week?) Some consistently give me a harder time than others. My heart is not always loving. Usually the day is compounded by my weariness. It is sometimes so hard to be consistent!
On those days I don't feel very much a loving Mom. If I am frustrated with a particular child or situation, I may not feel warm fuzzies toward that child. Parenthood is not a feeling, it is a commitment to that child and to the Lord to continue on -- even in the face of an angry or hurting heart toward that child. Have any of you ever felt like giving up? I know I have. Hopefully the other spouse is hanging in there. It gets rocky when both parents feel like throwing in the towel!
Bending down to hug and reassure a child after a rough day takes guts. Especially when your heart would rather ignore them. Forgiveness is a part of parenting that may be easier for some parents than others. It is a command from the Lord, however, and is an essential part of parenting. Generally this takes place after chastisement in our home. There is nothing more sweet and receptive than a child who has admitted their wrong, accepted the discipline and wants forgiveness and love. We take advantage of these moments to teach important truths.
Homeschooling in our home is an everyday, constant process. Like many have said before us, "Homeschooling is a way of life." In the morning when we are dressing the boys we work on speech therapy. We progress at a rate equal to where each child is, not under any pressure to perform, and 3 - 5 minute sessions several times a day. Our little ones go through several changes of clothes and diaper changes a day! They often can't wait to get on the changing table and play the game!
When we go grocery shopping, Sheela practices her cane travel. The aisles are an incentive and a curiosity. There are so many, many smells, sounds and textures. I wish we had a candid camera to capture the facial expressions of different people as they turn the corner almost running over a tiny, obviously blind, Indian girl with a cane making her way around the store! When we practice, we don't call to her. We act normal. It is up to her to follow us.
Parenting a special needs child is a challenge. Parenting many normal children can be a challenge too! It is true that our visions and dreams for our children may differ from the parent raising a child without a disability. A common denominator for all of us is the hope that our children achieve the best they can be. We as parents go to great lengths to see that they can.
As the Lord has worked in our hearts, healing some, and helping us to grow immensely in other areas, we have actually learned to enjoy this challenge. The challenge I am referring to is that of living with and raising a special needs child. It is true that we have worries that may not ever occur to a parent training a child without a disability. However, the joys of simple accomplishments are much more acute. The joy and celebration when Jordan took his first step at age 3 was quite a scene!
One of the most important things we as a family have learned, is to rely on our Lord Jesus Christ in every step of our lives. We rest and trust in His will for us, whatever that may bring. It is actually relaxing to let Him be in control. It takes all the question and stress off of us! We firmly believe that if we are willing to do whatever He asks, He will open and close doors for us. We just need to be willing to obey! We can honestly say He has never failed to work the events in our lives for our best interest.
Contact Christian Homes and Special Kids (CHASK) for resources on adoption and raising children with special needs at www.chask.org or 208-267-6246.